The International Stillbirth Alliance Newsletter

 

Volume II, Number 2

September 2008

© 2008 ISA

 

“Collaboration for the understanding and prevention of stillbirths”

www.stillbirthalliance.org

 

The International Stillbirth Alliance (ISA) is a non-profit coalition of organizations dedicated to understanding the causes and prevention of stillbirth. Our mission is to raise awareness, educate on recommended precautionary practices and facilitate research on the prevention of stillbirth. ISA serves as a centralized resource for sharing information and connecting organizations and individuals.

 

The ISA philosophy is to unite groups around these issues and use our strengths as a whole to make a difference. We believe that having a centralized place for stillbirth issues and sharing information will accelerate progress. Together, groups can provide the public with accurate and validated information about stillbirth. 

 

The goals of ISA are:
 

1.       TO CONNECT professionals, organizations and individuals for the purposes of initiating research on, educating about, and promoting awareness of stillbirth.
 

2.       TO COLLECT information worldwide that is related to stillbirth for families and researchers and store it in a central repository.
 

3.       TO EDUCATE on recommended precautionary methods through publicity campaigns aimed at the public and the medical community.

 

 

OCTOBER IS AWARENESS MONTH ACROSS THE GLOBE

  

What is Pregnancy and Infant Loss Awareness Month?
 

October 15th is now recognized globally as Pregnancy and Infant Loss Remembrance Day. A major event for the day is the "Wave of Light" candle light vigil beginning at 7:00p.m.

We encourage people around the world to light a candle in honor of a child who died.

Pregnancy and Infant Loss Awareness Month focuses on stillbirth as well as miscarriage, neonatal death, and SIDS, and is an opportunity to spread the word, teach our communities, educate, advocate, and build momentum for research and prevention. When a small group holds a candle-lighting service or a Walk to Remember, this can have an impact on the local community. However, when each group can say it is part of an international movement supporting people around the world in lighting candles or holding events to show the unity of thousands, if not millions, the impact rises in significance.


The growing energy to join in the global "Pregnancy and Infant Loss Awareness Month" can help us all in our efforts to make a difference for families who have had babies die and to do our best to reduce the risk and the numbers of these bereaved families over time.

This is your opportunity to learn about what is happening throughout the world and our opportunity to arm you with information and resources for future events and activities. Join us at an event or create your own. Together we can change the world!

 

To view events worldwide, visit www.pregnancyandinfantloss.org

 

In recognition of the month of October as SIDS, Pregnancy and Infant Loss Awareness month, First Candle has created an “Awareness Month Action Center,” accessible through our website at www.firstcandle.org. This site offers individuals and groups with a comprehensive array of resources, ideas and materials that they can tap into for their local efforts. The resources are categorized into four distinct areas: Education, Media, Advocacy and Memorial Opportunities.

 

Why Have an Awareness Day, Week, Month?
(This information can be adapted for your country and situation then used in press releases, newsletter, etc. to promote your activities) 

 

Families who experience this type of tragedy need sensitive caregivers, clear and comprehensive choices in their decision-making, understanding family and friends, and ongoing support and resources.  


The incidence of stillbirth, miscarriage, and early infant death (neonatal death) in each country of the world is far higher than imagined.  Each day babies die and the pain and grief that accompanies each loss is intense. In developed countries approximately 1 in 100 babies are stillborn or die in first month of life (neonatal death). In developing country settings this figure is as high as 6 in very 100 births and sometimes higher.

 

Additional training and education is needed to ensure that all professionals who interact with bereaved families are well-trained; sensitive to the needs of parents; aware of parents’ rights at the time of the death of their baby; as well as the resources to support families.

 

Family, friends, religious communities, and co-workers are often challenged in their desire to support bereaved parents.  With awareness and education on this issue, they can be better informed in ways to support parents; how to help, what to say, and what not to say.

 

Until rather recently, there was no research on the challenge of stillbirth.  However, during the past few years some scientists and physicians have been working to seek causes.  The need for research on causes and prevention is beginning to gain momentum. 

 

In order to gain more legitimacy for this cause and to share the research that does come out, the more awareness we build around the issue of stillbirth.  In addition, there is need for legislation, funding, and standardization of data, etc in each country.   With standard information will come more consistent efforts and clear reasons why stillbirth needs to be studied and prevented and why families deserve even better care.

 

Yes, awareness is important.  A supportive environment can make all the difference as to how parents incorporate the death of their baby, their precious child, into their lives in a healthy manner and how they can plan a subsequent pregnancy and parent after such traumatic loss.

 

History of Awareness Month in the United States

By Sherokee Ilse, Minneapolis, Minnesota

 

As the one with the idea to promote this concept and select October as our Awareness Month, I was recently asked by the ISA Parent Advisory Committee to write about the history for our newsletter and to put it up on the ISA website. I agreed wholeheartedly, and then began to wonder if my memory could really recapture it accurately. Thankfully, I recently found the entire set of ‘Loving Arms’ Newsletters from the national organization I co-founded in 1983, the Pregnancy and Infant Loss Center (the Center closed its doors in 2002). 

 

The newsletters chronicled the story, and now I will share a shortened version of the history. (May I suggest that those of you who have similar missions may want to consider writing down your group’s history.  You just never know when you might want to recall it only to find the memories have become fuzzy.)

The Chronology

1983 - During the first year of the Minneapolis, Minnesota based Pregnancy and Infant Loss Center’s (PILC) existence, plans were made to select a week in October and call it our First Pregnancy and Infant Loss Awareness Week.  I specifically chose October because the SIDS Alliance had previously made October SIDS Awareness Month, and I had hopes that one day we could work with them, learn from them, and benefit from their fine work in promoting SIDS and seeking causes and preventative strategies.  (Happily, that time has arrived and they have adopted stillbirth as a serious cause helping to elevate it nationally in the legislature, in scientific circles, and elsewhere).  With the teamwork of our Assist. Director, Susan Martinez and our volunteer staff and board of over 50 people, we secured the first Governor’s Proclamation in the nation when Governor Perpich named October 1-7 as Pregnancy and Infant Loss Awareness Week.  We held our first Memorial Service, a fundraising event, and two training sessions during that week.   And we decided that one week was not enough time.  We committed to make it the entire month of October the next year.

Our purpose and goals at the time were to – Reach out to more bereaved family and friends and to teach the world about this type of pain and encourage them to be good care providers and supportive family and friends. (See Why Have an Awareness Month above).

1984 – We invited groups and organizations in all other states to join in this idea, but we expanded it to the entire month of October.  Many groups throughout the United States did, indeed, use the month for special activities. 

1985 – We were not satisfied with each state doing their own Awareness Month.  Instead, we began banging the drum for a National recognized month.   The National slogan we put forth was – When Pregnancy Fails, we are here, we care.   We worked hard with the media and had good success locally, regionally and even national.

1986 – RTS of La Crosse, WI (Rana Limbo and Sara Wheeler) sponsored a National Perinatal Bereavement Conference (the first was held in Mpls, MN in 1983).  Prior to that conference, we worked with the RTS team and came up with the idea to hold the first “Walk to Remember” at the conference.  In addition, we encouraged groups throughout the country to also hold such walks during the month.   The purpose of the walks was to remember those special babies who had died and to promote education, awareness, and support. 

We also began to seek a Presidential Proclamation.

1987 – PILC led a massive drive for the Presidential Proclamation and held a National Awareness Event in Washington, DC.  Hundreds of people marched down the Mall towards the Capital carrying 500 baby quilts from all over the country and Canada.  A beautiful Memorial Service was held, organized by Connie Furrh and her Oklahoma team on the Capital steps where all the quilts were displayed.  Sadly, no press attended the press conference, but the seeds were sown for big things as groups worked tirelessly around the country with their legislators seeking the Presidential Proclamation.

1988 – President Ronald Reagan issued the long-awaited proclamation on October 25, 1988.  (www.pregnancyandinfantloss.org - Presidential Proclamation wording).  The celebration would have to wait until the next year, given when it was issued.

1989 – The activities throughout the land grew with the first official declaration for the October National Pregnancy and Infant Loss Awareness Month. 

1999 – Robyn Bear (Texas) and Lisa Brown began a grassroots campaign and found state leaders for every state in the USA  

1999-2003 – Robyn Bear, Lisa Brown and 50 state leaders around the country succeeded in receiving Governor Proclamations in EVERY STATE proclaiming October 15th, Pregnancy and Infant Loss Remembrance Day.

2006 -- Robyn Bear began promoting the October 15th Wave of Light after receiving Governor Proclamations from all 50 States around the USA.  The creative Wave of Lights concept asks everyone to light a candle at 7 pm for one hour in their time zone on October 15th which will result in a wave of light around the globe honoring all babies who have died.

September 28, 2006 – Robyn Bear, along with the help of Congressman Tom Latham succeeded in House Resolution # 222 being passed in the House of Representatives supporting the goals and ideals of Pregnancy and Infant Loss Remembrance Day.  

2008 – The October 15th website expanded their mission to be the official collector of all pregnancy and infant loss events during October throughout the world.  When people want to know what is going on in their community or in some other country they need only go to: www.pregnancyandinfantloss.org to find out.

GLOBAL EVENTS

 

UK History

 

Basically, a group of mums who were using the message boards at www.babyloss.com got together to make & sell ribbon pins to commemorate October 15th back in 2002 Carolyn Bray & Marian Currie coordinated 2003 together and it just grew from there. We started with the day which grew to a week 9 – 15th October so we always finish with the ‘Wave of Light’ on what we call Baby Loss Awareness Day. Marian Currie.

 

The Perspective from Sands Queensland (Australia)

 

Sands Queensland has celebrated Awareness Day for the past five years – since 2003.  The first year was commemorated by the release of doves, parents saying their babies’ names and the unveiling of a new wall-hanging to be used as a memory creation tool for parents. Succeeding years have seen Awareness Day celebrations include the release of butterflies and balloons and the lighting of candles. A Sands group in Townsville (North Queensland) has also conducted “A Walk to Remember – to take the steps that they couldn’t.” The memorial services are spiritual in nature and give parents an opportunity to gather with like-minded people to remember and reflect on their experiences. Liz Davis, Sands.

 

Italy

 

Our history in Italy is really short! 2007: a small group of bereaved parents in Florence met together for a balloon release on the top of Piazzale Michelangelo at 6 pm. At 7 pm we started the wave of light in Florence and in every house of CiaoLapo bereaved parents in Italy. We received some important feedback from parents, saying that commemorating babies helped families and friend to be closer to them. 2008: we invited many charity associations working on pregnancy, research on stillbirth, and research on fetal pathology, as well as parents of babies with fetal anomalies to participate. For this year we are organizing 3 major events, and as in previous years, we encourage everyone to remember our babies with the wave of light. Claudia Ravaldi and Alfredo Vannacci.

 

New Zealand

 

On October 15th as we all light our candles, we create a continuous wave of light around the globe for 24 hours. As the first country to see the light of each new day, we New Zealanders begin the Wave of Light. This year, Sands New Zealand is sending a pair of booties to every Member of Parliament to bring their attention to the number of babies that die every year in New Zealand and to let them know that there are many families throughout the country in need of support and information. Vicki Culling.


ISA Circle of Loved and Remembered Babies

 

This new ISA project has been organized to give families and friends the opportunity to honor, publicly recognize, and memorialize babies who have died.  Loving messages written about each baby will create lasting memories that will be displayed on the Memorial Message Pages.  This Circle of Loved and Remembered Babies will show parents around the world that they are not alone as they remember their babies forever. It will also serves as a poignant reminder to all working in the area of maternity care and research towards stillbirth prevention about “why we do what we do”.  (See below under Check out our Website for the entire article).

 

Sampling of Activities across the Globe

 

v                  The UK has one site that lists all their events for October including such activities as concerts, Remembrance services, walks, and balloon releases. Visit www.babyloss-awareness.org to view their list. The website also features “press packs,” resources for healthcare providers, and sample posters and programs which can help others plan their own events.

 

v                  16th US National Perinatal Bereavement Conference -- Caregivers and families are invited to this national conference in Clearwater, Florida, from October 16 to 19, 2008. Speakers include: Sherokee Ilse, Tim Nelson, and Suzanne Helzer, RNC; Dr. John Nelson, Karen Kaiser Clark, Dr. Irving Leon, Rana Limbo, PhD, Todd Hochberg, Joann O'Leary PhD, Madonna Daley, MS, RN, Sherokee Ilse, Tim Nelson, and Suzanne Helzer, RNC and so many more. This stimulating conference is not one to miss. Visit www.plida.org for more information.and so many more. This stimulating conference is not one to miss. Visit www.plida.org for more information.

 

v                  Ciaolapo Onlus, our Italian member, reports that, “For this October we have planned three major events: on October 15 the “Wave of Light,” balloon release in several Italian towns, and candle lighting ceremonies in Prato and Milan; on October 18 the CiaoLapo IV National Congress on perinatal death in Modena; and on October 19, the official opening of the new CiaoLapo local office in Modena and the CiaoLapo National “Baby Loss Awareness” meeting in the “Garden of Angels” in Castel S.Pietro, Bologna. See http://www.ilgiardinodegliangeli.net/en/ for more information

 

v                  SANDS Queensland Australia

IPIL Day Memorial Service 10 am, Performance Lawn, Brisbane Powerhouse 12th October

“A Walk to Remember’ Sands in Townsville, Queensland

 

v                  New Zealand

Auckland: Ribbon Pins: available from Sands Auckland Central; please wear one during the week in open support of each other and of Sands. If you would like a few to pass on to family and friends, please contact Sara for details on sandsaucklandcentral@gmail.com A gold coin donation would be appreciated. Awareness Stand: come along to St Lukes and support our stand on Thursday 9th October, we will be there for most of the day.

Balloon Release & Sausage Sizzle: Sunday 12th October, from 1:30pm for 2:00pm release, Central Auckland; Annual Global Wave of Light: Wednesday 15th October, Hospital Chapel, Level 6, Auckland City Hospital, 6:45pm.

Tauranga/ Bay of Plenty: Remembrance Service and Balloon Release: come along to the Olive Tree Cottage, 247 Joyce Road, Pyes Pa, and Tauranga at 11am on Sunday 12th October for our service of remembrance and balloon release in memory of our babies. 

Wellington. Baby Loss Memorial Service: Sands Wellington invites you to attend our annual Baby Loss Memorial Service at Old St Pauls Church on Mulgrave St, Thorndon on Sunday 12th October from 3:30pm. 'Supporting Parents, Families and Whanau Following a Perinatal Death' - Seminar for Health & Care Professionals: Sands Wellington is holding a free seminar for health professionals, funeral directors, counsellors, midwives and care providers on Friday 10th October from 9:30 to 11:30am at the Johnsonville Community Centre, Frankmoore Ave, Johnsonville. To register, or if you have any questions, please phone Vicki Culling on (04) 478-0895/021-776436 or email on v.culling@paradise.net.nz 

Timaru and Districts: Family Picnic - we invite you to join us at Knottingley Park in Waimate on Sunday 12th October from 1:00pm for our Sands Timaru and Districts Family Picnic. Annual Global Wave of Light: all over the world at 7:00pm on 15th October, parents are asked to light a candle in memory of their baby. This creates an ongoing wave of light around the world for 24 hours. We will be lighting our candles at our meeting on this night - if you have a special candle to light, please bring it with you, alternatively we can provide candles at the meeting. Display: We will have a display at the Timaru District Library during Baby Loss Awareness Week, so if you are out and about, please pop in and have a look!   

v                  SANDS SA (South Australia):

"Take the Steps Our Babies Could Not Take" walkathon on October 5, 2008, starting at 10 am from Torrens River Pinky Flat. Email information@sandssa.org for more information.

Candle lighting ceremony on October 12 at 10 am at the Children’s Memorial Garden in Enfield Cemetery, Browning St, Enfield

Candle lighting ceremony on October 21 at 7:30 pm at Hewett Community House, Kingfisher Drive, Hewett See www.sandssa.org for more information.

 

v                  Angel Names Association:

Annual Memorial Walk on October 18, 2008, from 12 to 4:30 pm at the Saratoga Spa State Park, Saratoga Springs, NY. The walk is designed to increase community awareness and support bereaved families. Though there is no fee to attend, participants have the opportunity to support ANA by obtaining sponsors and making individual donations. All those who have been touched by the loss of a baby through miscarriage, stillbirth and infant death are welcome to attend. We hope to see you there!

See www.angelnames.org for more information.
 

Visit www.pregnancyandinfantloss.org to list your activities and find activities to attend (or to give you inspiration for your own community)!
 

THE FOURTH ANNUAL ISA CONFERENCE 2008 IN NORWAY

 

We would like to invite you to the Fourth Annual ISA Conference 2008, to be held November 5-7, 2008, in Oslo, Norway.

Keynote topics and speakers are:

 

Monir Islam: “The Global Burden of Stillbirths” (Developing countries and social inequities - programs for effective prevention of stillbirths);

 

Mark Hanson: “Fetal Growth: Evolutionary History and Future Consequences”;

 

Dr. Stephen Pratt: “Patient Safety Issues in Obstetrics”

Programme:

In addition to these key topics, the conference will present a broad range

of the frontiers in stillbirth research, a full three-day programme on parental support and bereavement, a full programme in perinatal medicine in Scandinavian language, and a social programme to enable you to build international networks and to enjoy the city of Oslo.

 

Venue:

Oslo, the capital of Norway, is situated between the Oslo Fjord and the green hills of Oslomarka! The combination of city life and easy access to the fjord and the forest with its many possibilities for outdoor activities makes Oslo a unique destination. At the time of the conference, in November, you will enjoy the crisp air and warm hospitality of the city of Oslo in early winter.
 

The conference will be held at Radisson SAS Oslo Plaza Hotel. The hotel is located in the city centre next to the Airport Express Train station and close to Oslo’s new commercial district.  With 37 floors and breathtaking views of Oslo and the Oslo Fjord, the Radisson SAS Plaza Hotel is Northern Europe's highest and Norway's largest hotel.   

 

For more information, please visit: www.stillbirthalliance.org/conference/2008

 

 

And…the ISA 2009 Conference in South Africa

 

It’s not too early to start planning to attend the ISA 2009 conference, to be held in collaboration with the Priorities in Perinatal Care Annual Conference in Drakensberg, South Africa.

In 2000, over 6.3 million stillbirths and neonatal deaths occurred worldwide – almost all of them (98%) occurred in developing countries and 27% in the least developed countries. Globally, more than one-third of stillbirths take place intrapartum (during delivery) and are largely avoidable. While differences in definitions make comparisons problematic, the perinatal mortality rate is at least five times higher in developing than in developed regions: 10 deaths per 1000 total births in developed regions, 50 per 1000 in developing regions and over 60 per 1000 in least developed countries. In South Africa, the stillbirth rate has remained constant from 2000 to 2006 at around 25/1000 births. Unexplained stillbirths comprised 24.6% of all perinatal deaths and 37.7% of all stillbirths.

In 2009, the International Stillbirth Alliance will hold its annual conference in South Africa in collaboration with the Priorities in Perinatal Care Annual Conference in the Drakensberg in Kwazulu Natal (http://www.perinatalpriorities.co.za/Priorities.html) to assist in the continuing work to improve outcomes for mothers and babies in developing country settings.

The full program will run 8-13 March 2009 (ISA March 8-10 and the Priorities Conference March 10-13, including joint ISA/Priorities sessions). This conference will provide an opportunity to continue the work of the ISA 2008 Conference in Oslo which has a major focus on specific problems faced in developing countries in reducing stillbirth – but in a developing country setting.

 

The ISA meeting will begin with a joint plenary session followed by parallel sessions for the bereavement and scientific tracks, with workshops in both areas: interactive sessions with experienced bereavement counselors in the bereavement track; and workshops on establishing perinatal death review meetings, data collection and analysis in the scientific track. The ISA portion of the conference will focus on stillbirth and newborn deaths, covering the following themes: caring for parents after a stillbirth or neonatal death; causes of and solutions for perinatal deaths in developing countries; identification and recording of perinatal deaths in developing countries; classification system for perinatal deaths which is usable in developing countries; the role of growth restriction and infections in perinatal deaths, especially HIV/AIDS.

 

The Priorities in Perinatal Care part of the conference will cover the following themes: perinatal audit, maternal mortality, intrapartum hypoxia, appropriate technology for neonatal care, neonatal resuscitation, preterm delivery, HIV/AIDS, antenatal care, intrapartum care and research that investigates post-discharge neonatal deaths and postnatal follow-up of newborns, with or without reference to the linking of PPIP and ChIP data. Emphasis for oral presentations will again be placed on studies that are attempting to solve identified problems.


The ISA Conference Committee chair, Prof. Bob Pattinson (ISA Board member), and the Perinatal Priorities Chair, Prof. Eckhart Buchmann, extend a warm welcome to those interested in improving perinatal outcomes in developing countries to come to this collaborative conference in South Africa.

 

And…the 2010 Conference in AUSTRALIA

 

The 2010 ISA conference will be held jointly with the International Society for the Study and Prevention of Infant Deaths (ISPID) in Australia in October 2010.  

The 2010 Conference will focus on Connecting for life in preventing stillbirth and infant death and ensuring optimal bereavement support for families. The Conference themes will encompass the problems faced by the diverse populations of the Australasian region. The Conference Committee will announce the “east coast” conference destination and the main conference themes at the Oslo Conference in November. Hosting of the conference will be shared across The Australia and New Zealand Stillbirth Alliance and member organisations: Bonnie Babes Foundation Inc., SANDS Australia and New Zealand, Stillbirth Foundation Australia and SIDS and Kids (SIDS and Kids are also hosting the ISPID component).

The 2010 Conference Committee welcomes you to Connect for life with friends and colleagues (new and old) “downunder” in 2010.  We promise great Aussie hospitality, warm weather, Koala cuddling and a range of parochial culinary delights and an opportunity to build on the work underway in making a difference to the global challenge of stillbirth and infant death.

 

Have you say in shaping 2010!
Please send comments and suggestions about the ISA/ISPID 2010 Conference (program, venue, social program - anything at all!) To: info@stillbirthalliance.org

 

CHECK OUT OUR WEBSITE!

 

In each issue of the International Stillbirth Alliance Newsletter (ISAN), this section will highlight a recent addition to our website.

 

The Circle of Loved and Remembered Babies Launch!

 

Whether your baby died recently or many years ago, ISA encourages you to add your baby’s name to help create this circle. It is not simply a listing of names; instead this circle recognizes and acknowledges the existence of all babies who have died.

 

The Circle of Loved and Remembered Babies is not only a way to show your love for your baby, it is also a way to raise awareness and understanding about stillbirth. With your participation, ISA hopes to raise awareness globally across all areas of society about this important issue and by doing so, increase efforts towards prevention though research and policy.  ISA aims at an understanding of stillbirths in the broadest sense: research to understand why stillbirths occur, how they can be prevented, and how to provide optimal care for those affected; but also in terms of understanding and awareness by the public and society.

 

To add your own personal message honoring a special baby to the Circle of Loved and Remembered Babies, please go to the “Create a Message” page on the ISA website, www.stillbirthalliance.org. Create your message in the text box and it will appear on the website within one working day of your entry. ISA asks, but does not require, that you provide your email address so that we may contact you with further information regarding the ISA Circle of Loved and Remembered Babies, or your particular entry. Parents are encouraged to give the name of their baby in their message, even if only the first name, as this provides a more personal element for other grieving parents to connect with. However, the decision of providing the name of the baby is absolutely that of the parents, and depends on their personal preferences and beliefs.
 

To post a message please go to the ISA website:  www.stillbirthalliance.org

 

ISA/ANZSA Research Alert

 

The Stillbirth Research Alert is a collaborative activity of the International Stillbirth Alliance and the Australian and New Zealand Stillbirth Alliance (ANZSA). The aim of this alert is to provide a sample of plain language summaries and references of recent key papers on stillbirth. To view the latest research alert as well as previous issues, please visit the ISA website (www.stillbirthalliance.org) and follow the links under “Research”.
 

ISA ACROSS THE GLOBE

 

First Candle, USA, rolls out a Stillbirth Loop Network

 

Since February, First Candle, a national nonprofit organization that supports stillbirth and SIDS related issues and is based in Baltimore, MD, has been trying out a new idea with great success.

Over 75 parents and care providers, who are committed to acting as advocates and activists for stillbirth (research, awareness, education, and support), have been connected via an email ‘loop’.  This means that they have access to each other and can learn about issues, research, legislative work and policy priorities, October Awareness activities, etc. along with the opportunity to do something about these issues.  For instance, the members of the loop received an email about a national television program that highlighted Now I Lay Me Down to Sleep (free photography) and a news show that revealed care options for subsequent pregnancy management using monitors adapted by Dr. Jason Collins. 

 

The activists can ask for help in creating fundraisers that support First Candle stillbirth research or share special services or programs that they are doing in their own community.  In addition to the internet connection, these parents and care providers are invited to join in on a bi-monthly phone call where they may add their priorities to the agenda.  Consultant and ISA board member, Sherokee Ilse, has been hired as the Loop Manager. From the loop came the idea to train parents to be ‘peer support parents’.   Staff members sent out a power point training program via the internet and then participants learned, listened, shared, and role played on two phone call sessions.  Individual screening took place and a binder of helpful materials and forms were given to each participant.  Deb Boyd, First Candle Executive Director and ISA board member states, “This stillbirth loop of active parents and care providers has been one of the best things we have done at First Candle to promote networking.   These are creative, active people who want to help, and our loop gives them a chance to connect with others and really make things happen.” 

 

If you wish to learn more about the loop and how it is organized contact:
Jennifer.Johnson@firstcandle.org

If you wish to learn more about the peer training program contact:
Kathleen.Graham@firstcandle.org
 

 

A published article from Parent Advisory Committee Line Christoffersen

 

Our PAC member, Line Christoffersen from Norway, has co-authored an important article:
(together with Ingela Radestad), “Helping a woman meet her stillborn baby while it is soft and warm”.

The article reports that parents who have both seen and held their stillborn baby during the first 30 minutes after birth describe this as the most valuable time they had with their baby. But, not all parents are given this opportunity. Following stillbirth, parents are in a state of shock, and asking whether they want to see and hold their baby may suggest that it is not obvious that they would want to do so.  This creates doubt, and for many the spontaneous reaction may be to reply with a refusal they later regret.  To encourage parents to see and hold the baby immediately after birth, parents need to hear how (based on the health professionals' experience) the baby will look when it is newborn, and how it will change over the succeeding days. Parents need advice about what to do immediately after the birth of their child (take photos and see and hold the baby). The article published in the 4 September 2008 British Journal of Midwifery, Vol. 16, Iss. 9, can be found at http://www.intermid.co.uk/cgi-bin/go.pl/library/article.cgi?uid=30885;article=BJM_16_9_588_591
 

Highlights from the Australian and New Zealand Stillbirth Alliance (ANZSA)
a regional office of ISA
 

ANZSA, now established as a non- profit organisation, is currently calling for nominations for Board members and also members for its Research Committee. The Research Committee has been established to identify priority research areas and to conduct collaborative research to reduce stillbirth. 

One of the major activities of ANZSA has been the development of an educational program for care providers as an aid to implementing the Perinatal Society of Australia and New Zealand (PSANZ) Perinatal Mortality Guidelines. The guidelines were developed to assist midwives, nurses and doctors in the provision of optimal care following a stillbirth or neonatal death including investigations for stillbirth and neonatal deaths and psychosocial support for parents. However, uptake of the guidelines has been slow and it is anticipated that this educational program will increase the use of the guideline across maternity hospitals in Australia and New Zealand resulting in improved care and ultimately a reduction in stillbirth through a better understanding of the causes of death.

For further information about the PSANZ Guidelines, Perinatal Mortality Educational Program and Board and Research Committee nominations, please go to the ANZSA website: www.stillbirthalliance.org/anz 

 

 

Listening to…

Each issue of ISAN will include an interview with an ISA founder, Board member or Committee member. We welcome suggestions.

Listening to

Dr Ruth Fretts, currently Chair of the ISA Scientific Advisory Committee

Dr. Fretts has been involved with ISA since 2003. She is an obstetrician gynecologist who practices in the Boston area and is an assistant professor at Harvard Medical School. She began her research on stillbirth during her residency at McGill University in Montreal, Canada, in 1988. At that time she worked with Dr Robert Usher, a neonatologist who classified perinatal deaths for over four decades at the Royal Victoria Hospital. Dr Fretts then attended the Harvard School of Public Health in Boston where she received her Master’s degree in quantitative analysis and published papers in the New England Journal of Medicine on the changing pattern of stillbirth over three decades. She then began collaboration with Dr Frederik Froen on the prospective outcomes of pregnancies complicated by decreased fetal movement. During the three years that Dr Fretts has been Chair of ISA’s Scientific Committee, she has been involved in organizing many roundtables that mean a lot to researchers and parents alike. Specifically, the committee has struggled with the definition of stillbirth. This has been difficult because there are considerable differences in the international community on registration of these losses. The ISA has also attempted to move forward the classification of stillbirths. Classification is important because it helps researchers identify prevention and quality improvement strategies.

The ISA has attempted to identify a cost-effective approach to evaluating stillbirth, especially important because evaluation can help find out why a baby has died. We know that clinical history, autopsy, evaluation of the placenta and a few blood tests are the key components to evaluating why the loss of a baby may have occurred. Dr Fretts says, “I have benefited tremendously from being involved with the ISA as both a researcher and a parent; my experience has been priceless . We just hope that it makes a difference.”

Listening to

Liz Davis, Co-chair ISA Parent Advisory Committee

Liz tells us, “I have been involved with ISA since 2005 when I was selected to be the  Chair of the Parental Advisory Committee (PAC). Presently, I am the co-chair. The PAC has members from a number of different countries such as Australia, New Zealand, the United Kingdom, Norway, Italy and America. The diversity of the group adds to its strength. I have also been on the board of ISA since 2005.  

“I work as the Coordinator of Sands (Stillbirth and Neonatal Death Support) in Brisbane, Australia, and am Vice-Chair of Sands Australia and am involved due to my own personal experience of the death of my baby. The stillbirth of my son along with the miscarriage of a baby in the previous year changed forever my perspective and focus in life. There was no definitive reason for the birth and death of my baby and this has challenged me many times. I feel that a bond is developed between bereaved parents and this enables our Parent Advisory Committee to work very closely on a number of different projects, such as creating a list of support resources for the ISA website, helping with the bereavement side of most of our international conferences, strengthening the website in the area of bereavement, and our latest web project–‘Questions to ask your medical provider when in normal or higher risk pregnancy, after a baby dies, and when in a subsequent pregnancy.’ I feel privileged when speaking with bereaved parents and being given the opportunity to share their experiences. ISA enables parents from across the world to reach out and gain support at a difficult time in their lives, especially linking them to existing organizations and individuals who can provide help and support.

“I think that ISA is becoming a world leader in research and parental support. As an internet-based organization, ISA has the ability to lessen the isolation that parents may experience and to bring researchers and other healthcare professionals to the same table. The ISA conference this November in Norway is another vital step along the way to further supporting the goals and aspirations of the organization. The ISA conferences allow face-to-face communication to take place, which is also critical to our work.”
 

The stillbirth fact corner

 

Each issue of ISAN will highlight key stillbirth-related facts. We welcome submissions.

 

Mothers’ perceptions of fetal movement; A key to improving perinatal outcomes.

Two recent articles [check pub date] by ISA Board members Dr Frederik Frøen, Dr Babill Stray-Pedersen, Dr Ruth Fretts and Vicki Flenady, RN, and their colleagues, Alexander E.P. Heazell, Julie Victoria Holm Tveit, Per E. Børdahl, and Eli Saastad, point out that mothers’ perception of fetal movements is the oldest and most commonly used method to assess fetal well-being, a method to which almost all pregnant women adhere. The method seems to work--women who seek medical attention because of their perceptions of decreased fetal movements do indeed have a higher risk of stillbirth, fetal growth restriction, fetal distress, preterm birth, and other serious perinatal problems.  Improved awareness of fetal movements has been associated with improved perinatal outcomes.

 

Unfortunately, the “holy grail”—a clear and proven “alarm limit” of fetal movements, below which the alarm must be sounded—has proven elusive: no proposed definitions of decreased fetal movements have ever been proven to be superior to mothers’ own perceptions in terms of identifying risk to the fetus. There is currently not enough research evidence on the optimal management of women who report decreased fetal movements.  No randomized controlled trials have been performed. Given the lack of data, the research team advises that the use of specific limits developed for fetal movement counting should be discouraged. This does not mean fetal movement monitoring should not be used. Indeed, the strong associations between decreased fetal movement and adverse outcomes suggest several steps be taken when decreased fetal movement is perceived by the mother. These steps include confirming that movements are decreased through consultation and providing guidance to the mother about how best to count movements if necessary. If maternal concern remains, the exclusion of both acute and chronic conditions associated with decreased fetal movements should be undertaken including a nonstress test and an ultrasound scan. For more information, please see the full article at [source Semin Perinatol 32:243-246 and Semin Perinatol 32:307-311]

 

Trends in intrapartum fetal death in Ireland, 1979-2003

This 2008 study, authored by Walsh, McMenamin, Foley, Daly, Robson, and Geary, was undertaken to analyze trends in intrapartum fetal death and rates of perinatal autopsy over a 25-year period in Dublin, Ireland. Results of this long-term study show that there was a significant decrease in the rate of intrapartum fetal death in the period studied. This primarily resulted from a reduction in deaths attributable to intrapartum hypoxia. The study also found that rates of perinatal autopsy had fallen significantly during the same period, a matter of concern for researchers in particular.

Walsh CA, McMenamin MB, Foley ME, Daly SF, Robson MS, Geary MP. “Trends in intrapartum fetal death, 1979-2003.” Am J Obstet Gynecol. 2008 Jan;198(1):47 e1-7. 

 

Binge drinking in pregnancy and risk of fetal death

Drinking is considered binge drinking when there is an intake of five or more drinks on one occasion. A 2008 study by Strandberg-Larsen, Nielsen, Grønbœk, Andersen, Olsen, and Andersen examined whether the frequency and timing of binge drinking episodes during the first 16 weeks of pregnancy increase the risk of fetal death. 89,201 women from 1996 to 2002 participated in this study, and results showed that while binge drinking three or more times during pregnancy is associated with an increased risk of stillbirth, neither the frequency nor the timing of binge drinking was associated with an increased risk of spontaneous abortion.

Strandberg-Larsen K, Nielsen NR, Gronbaek M, Andersen PK, Olsen J, Andersen AM. Binge drinking in pregnancy and risk of fetal death.” Obstet Gynecol. 2008 Mar;111(3):602-9.

 

Viruses and other infections—a possible cause of some stillbirths?

The exact causes of almost half of all stillbirths are unknown. Recent evidence suggests that some viruses may be a contributing factor, either alone or in combination with other infections. This 2008 article by Rawlinson, Hall, Jones, Jeffery, Arbuckle, Graf, Howard, and Morris describes some of the causes of stillbirth including clinical, epidemiological, viral and other infectious agents causes. It summarizes some of the recently-developed molecular techniques used to detect the presence of any infection in the placenta and/or stillborn baby. Finally, the article describes whether the actual infectious agent caused death or whether there may be other causes. Having a correct diagnosis is a great benefit to parents in their decision-making for future pregnancies.

Rawlinson WD, Hall B, Jones CA, Jeffery HE, Arbuckle SM, Graf N, et al. “Viruses and other infections in stillbirth: what is the evidence and what should we be doing?” Pathology. 2008 Feb;40(2):149-60.

 

For further information about the latest research please see the ISA/ANZSA Research Alert at www.stillbirthalliance.org under Research

 

Study in Indonesia finds multiple-nutrient supplementation does better than iron and folic acid alone in reducing early infant deaths

In developing countries, nutrient supplementation for pregnant women is generally restricted to provision of iron and folic acid. This 2008 study led by Shankar compared the effect of maternal supplementation with multiple micronutrients to that of supplementation with iron and folic acid alone, on fetal loss and infant death. The study randomly assigned 262 midwives to distribute supplements to 31,290 pregnant women. Results showed that multiple micronutrients can reduce the incidence of early infant mortality and other adverse obstetric outcomes.

Supplementation with Multiple Micronutrients Intervention Trial (SUMMIT) Study Group, Shankar AH, Jahari AB, Sebayang SK, Aditiawarman, Apriatni M, Harefa B, Muadz H, Soesbandoro SD, Tjiong R, Fachry A, Shankar AV, Atmarita, Prihatini S, Sofia G. “Effect of maternal multiple micronutrient supplementation on fetal loss and infant death in Indonesia: a double-blind cluster-randomised trial.” Lancet. 2008 Jan 19;371(9608):215-27.

 

In other news…


In each issue of ISAN we will include other items of interest to the community. We welcome submissions!

 

16th National Perinatal Bereavement Conference

Caregivers and families are invited to the 16th National Perinatal Bereavement Conference in Clearwater, Florida, from October 16 to 19, 2008. Speakers include: Sherokee Ilse, Tim Nelson, and Suzanne Helzer, RNC; Dr. John Nelson, Karen Kaiser Clark, Dr. Irving Leon, Rana Limbo, PhD, Todd Hochberg, Joann O'Leary PhD, Madonna Daley, MS, RN, and so many more. This stimulating conference is not one to miss.

 

Visit www.plida.org for more information.

 

ASSISTANCE FOR BEREAVED FAMILY MEMBERS


Unique organization offers financial support for end-of-life needs

Angel Names Association (ANA), a United States nonprofit organization (and soon to be new ISA member) is dedicated to helping families of stillborn children.
Its services include: financial assistance for end-of-life and counseling services; supportive resources and Memory Boxes for hospital staff to present to bereaved families; grief education programs for bereaved families, the community, healthcare providers and funeral directors; a Lending Library containing publications specific to pregnancy loss and infant death bereavement; funding for stillbirth research; and an annual Memorial Walk. Since its inception in 2001, ANA has expanded from three to 10 programs, assisted families throughout the country, and granted funds to support stillbirth research. Board members are all volunteers, and 100% of donations fund ANA programs. ANA is willing to expand to other states and beyond as people come forward and more interest is generated.

Michelle Mosca and her husband, George, co-founded Angel Names Association six months after the stillbirth of their son, Nicholas. “He was our first child, so loved and wanted, and his death shattered our hearts,” said Michelle, who was 37 weeks pregnant when the movements of her usually very active baby changed drastically. Though she still sensed movement, the change in her baby’s activity level prompted her to seek treatment. By the time the Moscas reached the hospital, their son’s heart had stopped beating.

“After she told us that our baby had died, I remember asking the midwife what I could do, how I could help others and if I could donate his organs to help save another baby,” said Michelle. The midwife assured her that she would find a way to help others, and induction of labor began. Nicholas was born on October 23, 2000, with the umbilical cord tied around his neck. “He was perfect and beautiful, with a head full of black wavy hair,” said Michelle. “His death was a tragic accident that happened despite my having done everything possible to ensure a safe and healthy pregnancy.”

In the months that followed, the Moscas learned how to live without their beloved son and the life they had dreamed of having with him. They focused their energy on helping others and in May 2001, Angel Names Association was incorporated as a charitable, 501(c) (3), nonprofit organization.

ANA’s annual events include a Still Parents Luncheon held in May between Mother’s and Father’s Days, holidays that can be particularly difficult for bereaved parents, and an October Memorial Walk. The luncheon is designed to honor those who parented their children the best they could, for as long as they were able. All proceeds from this event, and from the Memorial Walk, are used to fund ANA’s programs, all of which are offered to the community gratis. ANA’s programs are made possible by the volunteers, organizations, and donors who support them. “Their support enables me to honor my son’s life, and the lives of all children who die too soon, by helping others,” said Michelle. “In a perfect world, no one would have to experience the trauma of stillbirth, and all babies would be born healthy.” For those who do endure this tragedy, ANA will be there to help.

For more information about ANA, to make a donation or to register for ANA’s annual Memorial Walk, please visit ANA online at www.angelnames.org
, or contact Michelle Mosca at mgmosca@msn.com.

Making lasting memories

Sufficient Grace Ministries for Women, Inc., is a non-denominational, 501 ( c ) 3 non-profit organization dedicated to offering comfort and hope to parents who experience the loss of a baby due to miscarriage, stillbirth, or infant death. This ministry was founded by Kelly Gerken in 2004, and was born from her own family's journey through loss: twin daughters, Faith and Grace (stillborn November 1996) and a newborn son, Thomas, who died six hours after birth from Potter's Syndrome. The Dreams of You Memory Book, Comfort Bears, and other bereavement materials offered by Sufficient Grace Ministries focus on helping parents find comfort in forming a lasting, tangible memory of their little one and honoring each precious life. Kelly is also an advocate for compassionate care, speaking at hospitals, churches and women's groups to help educate others on the needs of bereaved families.

For more information visit www.sufficientgrace.net
 or http://sufficientgrace-kelly.blogspot.com  

From a grieving father

Tim Stevens writes, “Nothing in my life ever prepared me for the situation we faced…how could it? In a dizzying eight days I went from expectant father to a benumbed shell: why was this tiny boy in my arms so still? “I always prided myself on being the tough guy…you know the kind—Army trained, high school wrestling coach who always liked to rough and tumble and be in the action. I will never forget the words of the doctor: ‘He will never be able to walk, never control his bowels or bladder, and may have even further loss of motor functions.’ How can this be? How can he be a championship wrestler if he will never be able to even move himself? I felt guilt and anguish at such selfishness.

“The reactions of the father, our social worker explained, are generally much different from those of the mother. Fathers tend to hold it in until six months down the road, and then the mourning process begins. Six months? I barely made it three days! Where was that toughness now? I cried more in the following week than I had in the previous 32 and a half combined! “Sometimes people think that because we (men) are not physically attached to the baby, we don't develop an emotional attachment as well. Nothing could be further from the truth. While it may not seem as real, we still share in the physical changes of our partners, the dreams of a life together as a family, and the devastation of loss. I thank God every day for the support of a caring network of friends and family who helped us make it through each day after Corey was delivered, because I'm not sure that I could have been strong to support Denise and myself alone.

“It's funny when I think about it. I've had 300 pound men twist and break my body on the mat but have managed to bounce back strong every time. Who would have dreamed that a mere 30-ounce little boy could tear down my resolve? I miss you, Corbin Daniel Stevens. I miss you a lot—Daddy.”

 

A Silent Man
by John Borg


A man stands before you weathering the storm
With broad shoulders under a burden that’s not the norm
There are hard things that must be done
To help lay to rest the little one we all loved
He stands before you when you hurt and holds you in his arms and feels your hurt
His shoulders stained with tears you have shed as he held you close till you fell asleep sound in your safe bed
He is always there when you need him most for this is his current post
He sees your tears and all your fears
But whilst he stands there your sentinel in that storm
Please take the time out to look at him twice
As before you stands a man full of hurt
A man whose body is numb from all that’s been done
Whose heart is crying out as it’s dowsed in pain
He holds back his tears so not to instill fear in the loved ones still around him close and near
His lips quiver and tremble in fear as he feels all alone when ready to shed a tear
Cause here stands a man who takes care of your hurt
But who is there for a man whose heart is about to burst
And yet there are tough decisions he still has to make
So when will this man rest his weary head
And be able to cry himself to sleep in a nice safe bed
Whilst watched over by a little angel he once had fed

 

 

Photo of “Man and his Grief”
courtesy of Sands Qld Inc

We welcome your newsletter contributions, please email: feedback@stillbirthalliance.org
 

ISA : WHO WE ARE


ISA Board
Vicki Flenady, Chair; Neal Long, Vice-Chair; Deb Boyd, Treasurer; Frederik Froen, 2008 Conference Chair; Leanne Raven, Secretary; Bob Pattinson, 2009 Conference Chair; Ruth Fretts, Scientific Advisory Committee Chair; Liz Davis, Sherokee Ilse co-chairs Parent Advisory Committee; Stephanie Fukui; Marian Sokol, ex-officio, past Chair

Parent Advisory Committee
Co-Chairs: Liz Davis and Sherokee Ilse
Members: Pauline Allman, Line Christoffersen, Vicki Culling, Sue Hale, Ros Richardson; Claudia and Alfredo

Scientific Advisory Committee
Chair: Ruth C Fretts, M.D., MPH.
Members: Michael R. Berman, M.D.; Adrian Charles, M.D.; Wes Duke, M.D., MPH; Dr Jan Jaap H.M. Erwich, M.D., PhD; Vicki Flenady, MMed Sc (Clin Epid); Frederik Frøen, M.D., PhD; Jason Gardosi, M.D. FRCOG FRCSED; Ron Gray; Marianne H. Hutti, DNS, WHNP-C; Dr A H Jokhio; Luigi Matturri, MD, PhD; Michael Paidas, MD; Richard Pauli, MD, PhD; Ingela Rådestad; Babill Stray-Pederson

Communications Committee
Co-Chairs: Sherokee Ilse and Marian Sokol
Members: Vicki Flenady, Stephanie Fukui, Grace Guyon

Fundraising Committee
Chair: Neal Long
Members: Carolyn Bray, Marion Currie, Vicki Flenady, Stephanie Fukui, Moni Ryzeck, Marian Sokol,

2008 Conference Committee
Chair: J. Frederik Frøen, Further details: http://www.stillbirthalliance.org/conference/2008/

2009 Conference Committee
Chair: Bob Pattinson
Members: Liz Davis, Vicki Flenady, Ruth Fretts, Frederik Frøen

2010 Conference Committee
Members: Debbie Chalmers, Liz Davis, Karen Faichney, Vicki Flenady, Rosemary Horne, Yee Khong, Emma Kirkwood, Ed Mitchell, Karen Passey, Leanne Raven.

Join a Committee!
These committees always need new members. If you would like to be involved, please visit our website or email info@stillbirthalliance.org

 

ISA Members and Associate Members
 

From Australia and New Zealand:
 

·         Australian College of Midwives

·         Bonnie Babes Foundation Inc.

·         National SIDS Council of Australia Ltd. (SIDS and Kids)

·         Perinatal Society of Australia and New Zealand

·         Royal Australian and New Zealand College of Obstetricians and Gynecologists Australia National Council, Inc. 

·         SANDS Australia National Council Inc.

·         Sands, New Zealand

·         Stillbirth Foundation, Inc., Australia

 

From Japan:
 

·         SIDS Family Association Japan

 

From Norway:
 

·         Norwegian SIDS and Stillbirth Society

·         Norwegian Society of Perinatal Medicine

·         Perinatal Research Centre

 

From the U.K.:
 

·         National Perinatal Epidemiology Unit,

·         University of Oxford

·         Royal College of Obstetricians and  

·         Gynecologists

·         SANDS (Stillbirth and Neonatal Death

·         Society)

From Sweden:
 

·         Swedish National Infant Fund

 

From the U.S.:
 

·         A Small Victory

·         Evie’s Network

·         First Candle/SIDS Alliance

·         Hygeia Foundation, Inc.

·         MEND

·         National Stillbirth Society

·         Seattle Children’s Office for Prevention of Prematurity and Stillbirth (Associate Member)

 

From Italy:
 

  • Ciao Lapo Onlus

 

From the Netherlands:
 

  • Fetal Medicine Foundation
  • Groningen Center for Perinatal Mortality - Dept Obstetrics and Gynaecology University Medical Center Groningen

 

From Vietnam:
 

  • The Institute for Reproductive and Family Health (RAFH)

 

From China:
 

  • Hong Kong Polytechnic University School of Nursing (Associate Member)

 

FEEDBACK


FEEDBACK WANTED!


Let us know how we’re doing. Email feedback@stillbirthalliance.org with your comments on this newsletter. What helped most? What helped least? How could we make it more useful to you?

SEEKING SUBMISSIONS!

Submissions for the next edition of the newsletter are welcomed.
Submissions
become the property of ISA; they may be edited for length and clarity and cannot be returned. Due to space restrictions, not all submissions can be printed; we appreciate your understanding. Every effort has been made to avoid errors; the Editor takes responsibility for any that remain. Please email your submission to: submission@stillbirthalliance.org

EDITOR Sherokee Ilse and Susannah Hopkins Leisher